12. What Might Cause ME? (Part 3)

My own personal ideas about what might cause ME.


Hi! In my last couple of videos, I have been talking about the possible causes of ME - Myalgic Encephalomyelitis, sometimes called Chronic Fatigue Syndrome. I’ve tried to cover just briefly some of the main ideas about the things that go wrong in the body when you have ME, what the triggers can be, and what mechanisms could be involved. Different people think that different ones of those ideas are right, but I’m not sure that anyone yet knows one definitive answer to ‘what causes ME?’, - but I do believe research could be making some good progress around the world at the moment. So in this video, I’m just putting together my own personal ideas, based on my experience, and what I’ve read and think I’ve understood, and from talking to hundreds of other people with ME. As I’ve said, I’m not a doctor, but I hope this could be a helpful way of looking at things, and of trying to get well from ME.

Firstly, I do believe there is a genetic predisposition that some people are born with, which can make us more susceptible to getting ME. I’ll hopefully say more about this another time, but we are all unique, and we have all inherited different genes, which, under certain circumstances, could make us more vulnerable to different illnesses - certain cancers, or asthma or arthritis, a weak liver or a weak heart, and so on. Two people may carry the same virus, but only one of them might become ill with it, because of our bodies’ different strengths and weaknesses, - and even that person might only become ill with that virus when there are other certain factors at work.

Now, as I said last time, there are all sorts of reasons for people having general long term fatigue or exhaustion. But ME is a definitely not just being ‘tired all the time’, it is a lot more severe and a lot more complex than that. ME is a real neuro-immuno-endocrine illness that can be very disabling and can last a very long time, and it has all the distinct characteristic symptoms and things going wrong in the body, which I’ve talked about before.

I believe at the root of what’s gone wrong in someone with ME are:
- the hypothalamus gland, and pituitary and adrenals, inflammation of the brain and nervous system, and not being able to regulate hormones correctly, - with neurological and cognitive and dysautonomic symptoms, oversensitivity, the headaches, pain, and sleep problems;
- and the mitochondria in the cells throughout the body not making energy properly, - with poor stamina, and feeling really ill out of all proportion to any activity, with very slow recovery, and muscle weakness and pain;
- also, critically, the immune system has gone wrong, - almost as if it’s stuck in the ‘full-on’ position;
- then, the digestive system and the liver, are often affected, with poor detoxification;
- and the heart and blood circulation are often seriously impaired;
- and the mind and emotions are often affected, under the control of the hypothalamus and brain problems.
With ME, I believe that all of these 6 circles are interrelated.

What triggers these things to go wrong together in such a catastrophic way with ME, often seems to be a combination of things. And these could also be a combination of previous things that haven’t healed before, of long-term ongoing things, and acute one-off triggers, and things that are perpetuating the ME or preventing recovery.
- Most often, the main trigger seems to be a severe infection, usually a virus, although it can be other types of infections, or after vaccinations;
- Another load on the body which can sometimes trigger ME is exposure to toxins and environmental factors, - toxic chemicals, pollutants, possibly radiation, and possibly over-use of antibiotics or other medical treatments;
- Occasionally, ME is triggered after a physical trauma, or surgery, - or a structural defect in the spine, maybe caused by an injury, or a weakness that someone’s born with. And it could sometimes also be more likely to be triggered towards the end of adolescence, or in pregnancy, or approaching the menopause;
- Major life events and emotional pressures can also seem to be one part of the triggering factors for many people when they get ME, - but not for everyone. Some research suggests that if animals get an infection at the same time as they are in some state of stress, then with some of them, their bodies’ physical stress response systems are pushed into a different, chronic ‘overdrive’ state that ‘cannot’ switch off (and their hypothalamus, hormones, nervous systems and immune systems and inflammation). It’s almost as if a particular switch has been flipped, one which does not react to either just the infection or just the stress situation on their own, but only when they happen together. That is of course just one theory, and there are lots of people who get ME after just one thing, such as a severe virus, or after a combination of 10 different things that didn’t seem to be related, and perhaps none of which were emotional or life stresses. And of course many other people do have life stresses, and may even catch the flu at the same time, without getting ill with ME, so that’s clearly not the whole answer, but I do believe it can often play an important part.

What really doesn’t seem to be known for definite at the moment, is whether that is the whole picture - whether it is a combination of loads which directly causes the ME, - or whether there is actually some underlying mechanism going on, and if that underlying problem weren’t there, then all those other triggers wouldn’t cause ME. This possible underlying cause of ME could be some other virus or infection (maybe one that hasn’t been identified yet, and maybe specifically attacking the brain and nervous system), or a retrovirus such as XMRV, or some other acquired genetic abnormality or gene expression, or some other ongoing problem that’s affecting the nervous system and hormones, immune system, and mitochondria.

When there have been epidemics of ME, maybe these have been a severe infection (or toxic exposure) which has been the main or only trigger for ME - or maybe they were actually this underlying cause, an infectious virus or retrovirus.

The other thing I’ve mentioned before is that it has been suggested that the onset of ME can sometimes be just partly associated with poor nutrition, a weak immune system, or insufficient rest and sleep, or pushing oneself too hard. So - I did say I trained as a structural engineer! - if there isn’t sufficient good food and nutrition, and not enough effective rest and sleep, AND someone has a genetic predisposition, AND they have whatever combination of loads or triggers, AND if there is an underlying mechanism with ME and that is present... then all the things that go wrong with ME, go wrong. The trigger may have been just one severe virus, or may have been 10 different things all built up, perhaps with an infection or vaccination or injury being the ‘final straw’ to break the camel’s back.

We can’t change our genetics that we inherited. So far we can’t treat any underlying mechanism yet until we know what it is - although we can keep supporting and hoping in the research that’s going on now. And some people are reporting possible good responses using Anti-Retroviral medicines.

But we can try to remove whichever loads or triggers are there; and try to strengthen our mitochondria, and immune systems, and all these other things; and of course to try and have best food and nutrition, and rest and sleep, that we possibly can - the best advice for all good health in general, - to give ourselves the best chances of getting better again. Some people may still not be able to make any recovery - and that is definitely not through any fault of their own, it’s not because they’re not trying hard enough or that they don’t want to get well - not at all. ME is a very complex and serious illness - or more likely perhaps a range of similar illnesses - and in my videos trying to describe ME, I feel that I haven’t even scratched the surface of all the science of what’s going on. I know that this is only one very broad way of looking at ME, and I might not be ‘right’ about it, but I think it has helped me to understand my own illness, and seems to reflect what many other people with ME who I’ve met have told me.

I’ll be back again soon, to start talking about treatments I’ve tried, or which other people have recommended - which could help some people with ME to get better, or a bit better, or perhaps just to manage the illness a little more comfortably. Bye for now!